From trust to skepticism: An in-depth analysis across age groups of adults with sickle cell disease on their perspectives regarding hydroxyurea

Abstract

Despite its efficacy, the uptake of HU in adults with sickle cell disease (SCD) is poor likely due to a combination of system, provider, and patient-related factors. We investigated attitudes of adult patients towards HU by conducting qualitative interviews with 95 adult SCD patients (age 18 to 67 years old, 71 were female). While 53% of all participants reported that they were currently taking HU, patients ranging in age 18–30 years (Group 1) were more likely to report current HU use as compared to those (Group 2) ranging in age 31–67 years (65% vs. 41% P = 0.01). Most Group 1 participants who reported currently taking HU indicated that the decision to start HU was made by a parent, though some made the decision themselves as a young adult. Group 1 participants expressed trust in the efficacy of HU as well as trust that their physician adequately shared risks and benefits for the medication. The Group 2 participants, who were not currently on HU, were skeptical that all the risks and benefits of HU were known, were concerned that the efficacy of HU was not proven, and that they were not receiving complete information about its potential side effects. Of Group 2 participants who reported currently being on HU, 25% were concerned about the side effects and efficacy of HU and reported continuing HU because of a lack of effective alternatives. These data suggest that there are significant differences by age in adult SCD patients’ attitudes towards, utilization and understanding of the risks and benefits of HU.

Implementation of near‐universal hydroxyurea uptake among children with sickle cell anemia: A single‐center experience

“…Although our guideline change and this manuscript focus on young children, we recommend hydroxyurea to all patients with SCA regardless of age, and have routine discussions about the importance of continuing hydroxyurea with good adherence beyond the transition to adult medicine at 21 years of age. Although an increasing number of pediatric sickle cell centers share a similar ideology regarding early initiation of hydroxyurea, 22 this is not universal, with many providers waiting until the onset of symptoms to start this medication 23–25 . A recent description of a medical home model for children with SCA through age 3 years revealed that only 10% of children cared for in the medical home clinic had started hydroxyurea, compared to other standards of care in this population, including 100% having started penicillin prophylaxis and 73% of eligible patients having undergone at least one TCD screening by 3 years 15 .…”

Comparative Effectiveness of a Web-Based Patient Decision Aid for Therapeutic Options for Sickle Cell Disease: Randomized Controlled Trial

“…Using a theory-based, iterative process based on the Ottawa decision support framework and large-scale community engagement, we obtained substantial input from these stakeholders on the conception, design, development, alpha and beta testing, finalization, and peer review of the patient decision aid. Stakeholder input also yielded insights into how patients and caregivers navigate decision making for SCD [62,63].…”

Impact of Medicaid expansion on access and healthcare among individuals with sickle cell disease

“…However, the data reported were on prescriptions filled and not adherence to hydroxyurea, which might be even lower in this cohort. In the absence of data on prescription rates, SCD genotype, other SCD modifying therapies, and individual compliance, it is difficult to determine the causes for low claims among the study cohort and whether they are due to healthcare clinicians underprescribing hydroxyurea to eligible individuals or to individuals underutilization of hydroxyurea due to lack of knowledge, negative attitudes and beliefs regarding hydroxyurea and its benefits, or recall barriers to taking the medication …”

“…National estimates indicate that approximately 75% of individuals with SCD have hemoglobin SS or sickle/beta zero thalassemia genotypes, and would, therefore, be eligible for hydroxyurea. Yet, hydroxyurea is neither optimally prescribed nor optimally utilized . The purpose of this study was to examine whether Medicaid expansion under the ACA increased Medicaid enrollment, increased hydroxyurea prescriptions filled, and decreased acute healthcare utilization among individuals with SCD in California.…”

“…Yet, hydroxyurea is neither optimally prescribed 18 nor optimally utilized. [19][20][21] The purpose of this study was to examine whether Medicaid expansion under the ACA increased Medicaid enrollment, increased hydroxyurea prescriptions filled, and decreased acute healthcare utilization among individuals with SCD in California. The study focused on individuals with SCD in California because California maintains a statewide surveillance program for SCD and expanded Medicaid coverage in 2014 under the ACA to low-income individuals.…”